Information about ichthyosis, including the impact on you or your child’s appearance, and what we can do to help here at Changing Faces.
Ichthyosis refers to a group of related conditions which cause dry, scaly skin. Many forms of the condition are congenital – meaning they are present from birth – although some types can develop later in life, as a result of another condition or medication. Ichthyosis cannot be cured, but the symptoms can be treated.
Ichthyosis can have a noticeable effect on you or your child’s appearance. Common to all forms of the condition are dry, scaly skin. Different types of ichthyosis cause other visible features, such as red skin, tight skin, blistering and hair loss, as well as other symptoms which may not be apparent from your appearance.
On this page, we will look at the different types of ichthyosis and how it is diagnosed and treated, as well as how it can affect your appearance and the impact this can have on your wellbeing. We’ll also talk about how we can help with the mental health impacts of life with a visible difference.
Clothing has to be carefully considered. That said, Poppy absolutely loves her clothes – and if she’s set on wearing something, she will!
While all forms of the condition cause dry, scaly skin, different types of ichthyosis differ in other ways. In this section, we look at two categories of ichthyosis:
Some very rare forms of ichthyosis, such as harlequin ichthyosis, can occasionally be life-threatening to infants. However, lifespan is unaffected for people with most forms of ichthyosis.
Congenital forms are caused by genetic mutations in the keratinocytes (a type of skin cell) in the stratum corneum (outer skin barrier).
This is the most common form of ichthyosis, making up 95% of cases. One in every 250 people has it, and it is relatively mild, compared with other forms of the condition. It is caused by inheriting the affected gene from one or both parents. Where the gene is inherited from both parents, it tends to be more severe.
Ichthyosis vulgaris is not usually present at birth. It tends to appear between the ages of three months and five years. The first symptoms are dry skin with fine, white scales, which develops into skin with a goosebump-like appearance. It tends to affect the abdomen, arms and legs, with the creases in the arms and legs usually unaffected.
This form of ichthyosis affects one in 2,000-6,000 people. It almost exclusively affects males/those assigned male at birth, who have a single X chromosome with the affected gene. Females/those assigned female at birth are usually protected by having an X chromosome which is unaffected. It can occur from birth and almost always within the first year of life.
In X-linked ichthyosis, scales tend to be brownish in colour and can be up to a few centimetres in size. They occur all over the body, particularly the trunk, back of the neck and outer arms and legs. The condition is usually worse in the winter. Some people have eye changes, undescended testes and, occasionally, delays in learning development.
Other forms of ichthyosis are rare. We have listed some of them here, in alphabetical order:
You can read more about these and other forms of ichthyosis on the Ichthyosis Support Group website.
Eight-year-old Poppy has harlequin ichthyosis. The condition brings many challenges, from managing the condition to dealing with others’ reactions. But in many ways, Poppy is like any other little girl. Poppy’s mum, Amy, tells her story.
Read Amy and Poppy’s storySometimes, ichthyosis develops later in life due to:
These forms of ichthyosis are managed in the same way as genetic forms of the condition. They may go away if the root cause is tackled, for example, if the underlying medical condition is successfully treated, or if you come off the medicine which is causing ichthyosis.
Conditions which can cause ichthyosis include:
Medicines which can cause ichthyosis include:
Yes, most forms of ichthyosis are genetic, and are either inherited from one or both parents, or due to a spontaneous mutation (change) to the affected gene. Please have a look at the previous section, on the types of ichthyosis, to find out more.
Ichthyosis is usually identified through a clinical diagnosis – by looking at the signs and symptoms. A biopsy or blood test may be carried out to confirm the diagnosis by checking for telltale genetic changes.
Prenatal (before birth) testing can be carried out for some forms of ichthyosis. However, it is not routine, so discuss this with your doctor if you are worried about ichthyosis occurring in your baby.
Treatment varies from case to case and for different forms of the condition. However, the main treatment for ichthyosis is to keep the skin moist through the use of moisturisers and emollients.
Frequent and careful bathing may be one way you manage your symptoms. For example, Poppy, who has harlequin ichthyosis, takes a long bath, lasting several hours, every day.
Ichthyosis can leave you susceptible to infections. Antibiotics may be needed to fight off bacterial infections.
Ichthyosis can have a noticeable effect on you or your child’s appearance, although this varies a lot from person to person. It can cause pronounced redness and, depending on the type of ichthyosis you have, a scaly or plate-like appearance to the skin. In some forms of ichthyosis, skin may flake off from time to time.
Depending again on the type of ichthyosis you have, other signs can include blistering, tight skin, hair loss and changes to the appearance of your eyes and/or other facial features. In some people, the visible difference may be more pronounced at some times than others. For example, X-linked ichthyosis tends to be more pronounced in the winter.
Looking different may make you feel self-conscious and can attract unwanted attention from others. This may be in the form of prolonged looks or stares, questions and even unkind comments. This can take a toll on your mental health – in the next section, we talk about the ways we can help.
We’re here to help if you or your child are struggling with the mental health impacts of a visible difference such as ichthyosis.
One way we can help is through our counselling and wellbeing support services, which are designed to help you manage the social, emotional and psychological effects of life with a visible difference. Our trained practitioners will listen and provide guidance on the difficulties you may be facing. Have a look at our dedicated page, where we outline what we can offer and how to access our services.
We also have a series of self-help advice and guidance pages covering the different aspects of life with a visible difference. This includes other people’s reactions, social life, work, dating and relationships. We also have resources aimed at parents of children with visible differences, as well as pages especially for children and young people. These cover topics such as school life, social media, body image and bullying.
Our other services include:
Contact our Support and Information Line to discuss your situation and find out how to access our services. Our friendly team also offer support calls to help you deal with the impact of ichthyosis on your life.
Guidance, support and advice is also available from other organisations. Please follow the links to their websites to learn more.
A national membership organisation providing detailed information about different forms of ichthyosis, as well as an email newsletter, advice from medical specialists, and events for families and children impacted by ichthyosis. The Ichthyosis Support Group also attends dermatology conferences and events, and raises awareness about the condition.
A national, highly specialist psychological service based at North Bristol NHS Trust, supporting adults (16+) with appearance-related distress. They can provide face-to-face and remote support via NHS Attend AnyWhere. Please speak to your GP or healthcare professional to discuss a referral.
Please have a look at the NHS conditions page for official guidance on ichthyosis, treatments available on the NHS, and things you can try at home to relieve and manage symptoms.